Happier endings

The last conversation most cancer patients have should be the first

DYSPEPSIANA | James Krohe Jr.

You’re in your doctor’s office. You’ve just been told that you have cancer – one of the bad ones, like those that attack the pancreas or the liver or the lungs or the ovaries – and that it has spread. The doctor will then tell you what he or she intends to do to help you fight it. What he is less likely to tell you is what he intends to do if you lose that fight.

Guidelines for end-of-life care advise against chemotherapy and admittance to intensive care units in the final two weeks of life. At that point chemo almost never does any good, and most terminal cancer patients would rather die at home than in an ICU. Recently researchers at the Dartmouth Atlas of Health Care looked at how diligently cancer treatment facilities followed those guidelines. Nearly a quarter of patients were admitted to an ICU in the last month of life; one in 10 patients received a chemotherapy treatment in their last two weeks.

Why? In many cases, it’s because doctors believe that another-day-at-anycost is what their patients want. But what their patients want is often based on misinformation. A recent study of several hundred patients with incurable lung or colorectal cancers found that between 70 and 80 percent of them believed that the  chemo they were being given as a palliative would cure them, even though cures in such cases are next to impossible. The causes of the confusion are several. Doctors say “treat” and patients hear “cure;” doctors say “survival rate” and patients hear “cure;” doctors say “stabilize” and patients – well, patients often hear whatever they want to hear.

Which is why more effort needs to be put into telling them what they need to hear. End-oflife guidelines have long suggested that doctors begin discussions about end-of-life care shortly after a terminal illness has been diagnosed, but no one quite knew whether such discussions actually affected the decisions patients make about end-of-life care. To find out if they do, staff of Boston’s Dana-Farber Cancer Institute studied 1,231 patients whose stage IV cancers proved fatal. They found – again – that nearly half of them had been given aggressive treatment during their final 30 days. More important, they also found that patients who had early discussions with their doctors about end-of-life care were significantly less likely to receive such aggressive late treatments and were significantly more likely to enter hospice care before death.

Part of the problem is that it is very hard to talk with patients who have not yet come to terms with the fact that their cancers will kill them. (Patients usually don’t get the lingo. They are angry or in denial.) Physicians are trained (and rewarded) to treat, not talk, to heal (or at least to prolong life), not to deal with death. This is a fault in medical training, not in doctors.

However, we must also admit explanations less flattering to the medicos. These include professional vanity, which is a common disease among male specialists in particular. They strive to keep people alive at all costs – those costs being paid, of course, by the patient. (I will leave it to readers to judge whether the fact that oncology practices earn more than half of their budgets by selling chemotherapy drugs might be a factor in their decisions to recommend chemo in the face of the patient’s wishes.) The warrior-doctor is especially reluctant to accept that being a good doctor sometimes means giving up trying to prolong a life gone bad to help them to a good death.

Other MDs assume that they know their patients’ goals and preferences, but surveys repeatedly show this not to be the case. Patients lie to their doctors, for one thing. For another, many doctors, especially surgeons, are famously not empathetic human beings (although sensitivity to others can be paralyzing to a doctor dealing with emotionally fraught situations such as dying). And, astonishingly, there are still physicians who reserve for themslves the right to withhold the truth from dying patients, thus preventing them and their families from making intelligent preparations for their own ends. This is unconscionable arrogance. Patients have the right to make informed decisions about their health care, including when to stop it.

Happily, the arrogance or cowardice of so many physicians has spawned a belated reaction in the profession. I have found young physicians to be more open and frank about such matters. Physicians-to-be even now have the option to train for the new medical specialty of palliative care. Such training distinguishes between treating cancers and treating people who have cancers. Rather than quixotic efforts to make life longer, such specialists try to better the quality of the life that is left.

Sadly, palliative care specialists, like hospice care workers, are usually among the last people a dying person sees when they should be among the first. Why is that so? Why don’t you ask your doctor? It might be an interesting conversation.

Contact James Krohe Jr. at krojr@comcast.net.